Living with Infantile-onset autosomal recessive nonprogressive cerebellar ataxia
A rare inherited condition with balance and coordination problems from infancy that doesn't get worse over time.
Understanding Infantile-onset autosomal recessive nonprogressive cerebellar ataxia
It begins in infancy. It brings delayed movement and speech development, an unsteady walk, low muscle tone, strong reflexes, and unclear speech. Brain scans show shrinking of the cerebellum, especially the middle part (vermis).
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Unsteady walk
- Clumsiness
- Delayed speech and language development
- Unclear speech (dysarthria)
- Shrinking of the cerebellum on scans
- Intention tremor (less common)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
National Ataxia Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: National Ataxia Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with National Ataxia Foundation
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says it is inherited in an autosomal recessive pattern, meaning a child inherits a changed copy of the gene from each parent. It doesn't name a gene.
Also known as: autosomal recessive spinocerebellar ataxia type 6; infantile-onset autosomal recessive non progressive cerebellar ataxia; norwegian infantile onset ataxia; scar6; scar6 - autosomal recessive spinocerebellar ataxia type 6
Patient organizations
- National Ataxia FoundationAtaxia · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Infantile-onset autosomal recessive nonprogressive cerebellar ataxia.
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